On My Own

by Diane Rehm

  ALSO BY DIANE REHM

  Finding My Voice

  Toward Commitment (with John Rehm)

  Our twenty-fifth wedding anniversary, 1984

  THIS IS A BORZOI BOOK PUBLISHED BY ALFRED A. KNOPF

  Copyright © 2016 by Diane Rehm

  All rights reserved. Published in the United States by Alfred A. Knopf, a division of Penguin Random House LLC, New York, and distributed in Canada by Random House of Canada, a division of Penguin Random House Ltd., Toronto.

  www.aaknopf.com

  Knopf, Borzoi Books, and the colophon are registered trademarks of Penguin Random House LLC.

  Library of Congress Cataloging-in-Publication Data

  Rehm, Diane.

  On my own / Diane Rehm. — First edition.

  pages cm

  ISBN 978-1-101-87528-5 (hardcover) — ISBN 978-1-101-87529-2 (eBook) 1. Rehm, Diane. 2. Radio broadcasters—United States—Biography. 3. Widows—United States—Biography. 4. Bereavement—United States. 5. Loss (Psychology) 6. Adjustment (Psychology) 7. Rehm, John B.—Health. 8. Parkinson’s disease—Patients—Family relationships. I. Title.

  PN1991.4.R438A3 2015

  791.4402'892—dc23

  [B] 2015023006

  eBook ISBN 9781101875292

  v4.1_r1

  ep

  Contents

  Cover

  Also by Diane Rehm

  Photograph

  Title Page

  Copyright

  Dedication

  A Decision

  Fifty-four Years of Marriage

  The Memorial Service

  A Surprise Honor

  Guilt, Guilt, Guilt

  Changing Roles

  A New Model for Living

  The Roller Coaster

  Our Bed

  I Think I’m Okay

  Sunsets

  The Long Glide

  Sickness

  E-mailing Scoop

  Heaven

  New Relationships

  A Cutting Board

  New Friendships

  Healing

  Grief Counseling

  What’s Next?

  Losing a Friend

  November 23, 2014

  The Christmas Holidays

  Grief

  The New Year

  Tragic Death

  Reality

  Waves of Grief

  What Lies Ahead

  Planning for the Future

  Closure

  Who Am I?

  A Mass Memorial Service

  Retirement

  June 23, 2015

  Acknowledgments

  This book is dedicated to the memory of John Rehm

  A Decision

  On June 14, 2014, my husband, John Rehm—age eighty-three—began his withdrawal from life. The aides at Brighton Gardens were instructed to stop bringing medications, menus, or water. His decision to die came after a long and difficult conversation the day before with Dr. Roy Fried, his primary physician; our son, David; our daughter, Jennifer, who was on the phone from Boston; and me.

  John declared to Dr. Fried that because Parkinson’s disease had so affected him that he no longer had the use of his hands, arms, or legs, because he could no longer stand, walk, eat, bathe, or in any way care for himself on his own, he was now ready to die. He said that he understood the disease was progressing, taking him further and further into incapacity, with no hope of improvement. Therefore, he wanted to end his life.

  Clearly, his expectation—and his misunderstanding—was that, now that he had made his decision, he could simply be “put to sleep” immediately, with medication. When Dr. Fried explained that he was unable to carry out John’s wishes, that he was prohibited from committing such an act in the state of Maryland, John became very angry. He said, “I feel betrayed.” Tears came into his eyes, tears of frustration and disappointment. Here was a man who had lived his life able, for the most part, to take charge of events, to be certain that his well-considered decisions would be carried out. And now he was making the ultimate decision, and having it thwarted.

  It was then that Dr. Fried explained that the only alternative John had, if he truly wished to die, was to stop eating, drinking fluids, or taking medications. In other words, he could bring his life to an end through those means, but no one could do it for him. Dr. Fried added that he hoped John would not make the decision to end his life, but that, if he did so, as his physician he would honor it.

  My husband had moved into assisted living at Brighton Gardens in Chevy Chase, Maryland, in November 2012, because he could no longer stand or walk without falling, or care for himself without assistance. We’d spent months talking about the decision we both knew was coming. We went over and over various possibilities, such as having someone move into our apartment to care for him on a twenty-four-hour basis, but we knew that wouldn’t work: there was simply not enough room for another human to be here full-time.

  Most days I spent part of the afternoon with John at Brighton Gardens. Sometimes we’d sit silently, particularly in the weeks immediately after he moved in. Although he never admitted feeling resentful, it was clear he was unhappy. He had a private room, but was now in an institution, in the company of strangers, eating foods he didn’t care for in a large communal dining room, and feeling an extreme loss of privacy. But slowly he regained his sense of humor, his interest in world events, and his happiness each time I walked through the door.

  Over the years, John and I had talked many times about how we wanted to die. We had promised that we would do everything we could to support each other’s wishes in the face of debilitating and unalterable conditions. Yet here I was, helpless to keep my promise. I could do nothing but listen as he railed against a medical and judicial system that prohibited a doctor from helping him die, even knowing that what awaited him was prolonged misery, further decline, and, to his mind, loss of dignity.

  So John did what I dreaded, but knew in my heart he would do: he declared he would stop eating, drinking, or taking medications. He asked Dr. Fried how long the process of dying would last and was told it could be ten days to two weeks. John wanted to know, “Will I be in pain?” “Absolutely not,” responded Dr. Fried. “I promise you, you will be kept comfortable.”

  A few months before this, John had come down with what’s so often been called the old man’s blessing. I was in South America, on a cruise with NPR listeners. It was a Saturday evening in March, and before I went to join the group for dinner, I called Brighton Gardens to check in. Our dear friends David and Mary Beth Busby were there with John, and Mary Beth answered the phone. When I asked how John was, she said, to my shock, “He’s not responsive.” I wasn’t sure I was hearing correctly. “What do you mean, Mary Beth?” “Well, just that,” she said. The two of them had been sitting there with John for an hour or so, and he was simply not moving; he was in a deep sleep, not responding to their questions, not moving when they prodded him. I asked her to feel his head. “Warm,” she said. I immediately called Dr. Fried, who instructed an aide to take his temperature. It was 101.5 degrees. Dr. Fried said John was probably experiencing pneumonia. Urgently I demanded to know what he would do next. Dr. Fried said he would order oral antibiotics for him, but warned it could be four hours before they arrived, and that John might not be able to swallow them. At this point, I lost all composure. I screamed into the phone, “But he could be dead in four hours!” Dr. Fried then said he would go to a nearby pharmacy to obtain an injectable form of antibiotic, which he did, taking it to Brighton Gardens that night and giving John what may have been a lifesaving dose of the drug. It was 6:30 Saturday evening, and I was in Buenos Aires. I tried to get a flight out that very evening, but it was too late, so I flew to Miami the next night and then home to Washington on M
onday.

  By the time I arrived, John had responded well to the medication and was making a good recovery. All of our friends, as well as our son, David, who had hovered over him during the critical period of my absence, were amazed and delighted at the turnaround.

  Sadly, within three weeks of my return, pneumonia again crept into John’s lungs. Whether it was a remnant of the first infection or a brand-new one, he was again feverish, coughing, and exhibiting all the other symptoms he’d had earlier. He was put back on antibiotics, this time for a longer period.

  After the second bout of pneumonia, and lengthy and extraordinarily frank and compassionate discussions with Dr. Fried and me, John said he no longer wished to be treated with antibiotics should he experience pneumonia yet again. He was clearly in a more weakened state.

  Two months later, he was placed under hospice care, which meant the doctor had concluded that he had six months or less to live. John had already made clear his wishes for “comfort care only.”

  And so on June 14, John began to carry out his decision to withdraw from life. Some of the aides at Brighton Gardens were clearly uncomfortable with the instructions to cease bringing all food, water, and medications, and during the first two days came to see him, asking whether he didn’t want to change his mind. John said “No” pleasantly, even cheerfully, as though, somehow, he had taken back his life and could do with it as he chose. So I sat by my husband’s side as he slowly died.

  I rage at a system that would not allow John to be helped toward his own death. He was of rational mind, with no hope of recovery, knowing full well that the only way ahead was a slow downward slide, moving toward more incapacity and even greater indignity. Why should it be that only a few states allow aid in dying with help from a trained physician willing to offer the ultimate gift? Why should my husband have to starve himself to death? I wonder, too, why John should have had to be so alone in the dying process. I cry at the loss of what might have been this final intimacy between us, replaced by a long descent into oblivion, unaware of his family and friends beside him offering him a loving farewell and wishing him a peaceful journey.

  On the day John made his decision, I brought him a photograph album I’d made for him many years earlier recording his childhood and youth, from his birth in Paris, where his mother and dad had met, to his graduation from Friends Seminary in New York. He loved seeing the photos of the pond near the little house in France where he had spent the first six years of his life. His father worked the night shift at the Paris Herald Tribune, and therefore slept a good part of every day. John remembered attending a small French school at age three, and having the teacher put a pen into his hand on the very first day.

  That hour, as I sat beside him on his bed going through the photographs, was extraordinary. Here was a man who had just decided he wanted to end his life experiencing so much joy as he reflected on his early years, while I, as I always had, adored gazing at his baby pictures. He was a beautiful child and a beautiful young man.

  We had spent many months reflecting on our marriage, our life together, the joys and sadness we had shared, recalling many special moments of closeness, particularly sexually. But I wondered why we had wasted so much time in conflict with each other.

  Out of those conversations came some starkly frank admissions from John, including a tearful confession of what he called his “deliberately emotionally abusive behavior” toward me. I was stunned at his bold words, having always wondered whether this behavior came from some deep desire to wound me—or to wound someone else. My suspicion had been that I was the mother against whom he had never rebelled.

  That this admission came from John at nearly the end of his life almost made me leave the room in tears. How much anger, how much hostility had been directed at me, in the form of silence and withdrawal, how much frustration I had experienced with his denial of love and kindness on so many occasions, and now, on his deathbed, he was acknowledging to me that his behavior had been deliberate, and intended to wound me. I can still recall the pain I felt after he uttered those words, the desire to run from the room and give myself time to breathe. But here was the man I loved, leaving me with what I suspect he felt was a final “gift” of confession, one that he believed would take away the questions I’d long had in my mind as to why we had had such a difficult marriage.

  What could I say? I told him I forgave him, and said I knew that I, too, had not always behaved in constructive ways. I asked him why he thought he had acted as he did, constantly withdrawing into silence, refusing to engage with me for weeks at a time. He simply said, “I don’t know.” I asked whether he thought he should have married at all. “Perhaps not,” he said. “I always knew I was a loner. But then I would have missed out on so much in my life—you, David, and Jennie.” He said he thought he might have spent his life reading, listening to music, writing poetry, disengaged from the people and the world around him, much as he had lived his early years in France.

  I will always remember those conversations. Had John died suddenly, I would never have heard such words of regret from him, never heard him acknowledge how much our marriage and family had meant to him, or how our life together had changed him as a human being. They were so incredibly important to me and clearly to him as well.

  From Saturday, June 14, through late Monday afternoon the sixteenth, John said he felt fine, “quite well, in fact.” But by Monday evening, he was beginning what he had envisioned as “the long glide.” He fell into a deep sleep and only occasionally made gestures with his face or his arms. His lips became parched. Either I or Musa Bangura, his faithful caregiver, would apply lotion. When we offered him chips of ice, he refused them, signaling that he didn’t appreciate the cold. But there were tiny square sponges we could put into his mouth, to moisten his inner jaws and lips. Those seemed to comfort him.

  On Wednesday, June 18, Jennie, an internist at the Lahey Clinic in Boston, flew in, and David drove down from Emmitsburg, Maryland, where he is provost at Mount St. Mary’s University. Jennie walked into the room, put her hand in her father’s, and said she felt sure he responded when she squeezed his hand. That was the last time Jennie was able to see her dad alive.

  Throughout those ten days, surely the longest of my life, I could only watch his breathing, steady and deep, and listen to his cough, which became more and more ragged. But there were no more waking moments, only an occasional low moan or a facial contortion of discomfort, for which he was given small doses of morphine. I sat by his side, never forgetting that he had chosen to die. I totally understood and supported his decision. But it was excruciating to witness.

  I confess there were moments I wanted to shake him awake, to give him sips of water, to put a touch of applesauce into his mouth, to rekindle his taste and love for food. But I couldn’t. That would have violated his wishes and his desire to die sooner rather than later. Nevertheless, I wanted him to know how much I loved him and how I didn’t want to lose him. Even in your weakened state, I wanted to tell him, you are precious to me and to all those who love you.

  They say that the ability to hear is the very last of the senses to leave us. I hope and pray that John did hear me during those last awful days.

  The day before he died, a Sunday, David drove down again. In the afternoon, a dear friend of ours, Jerry Anderson, an Episcopal priest, came by to see John. Together with other friends who were there as well, I asked Jerry whether he would be willing to offer us all, including John, Holy Communion. He agreed, and I went downstairs to the kitchen for a glass of red wine, which Jerry consecrated, and, as we all prayed together, I put a drop of the wine on John’s tongue and Jerry gave him the Last Rites. He had no reaction, but I was so very thankful Jerry had been there on what became the last full day of John’s life.

  John Rehm died at 10:30 Monday morning, June 23, 2014. He died with only Musa at his side. I had spent Sunday night sleeping in two chairs next to him with our little dog, Maxie, on my stomach, fearing John might die without
my being there to hold his hand. Early that morning, after Musa arrived, I gathered up my belongings and told him I was going home to shower, have breakfast, and return as quickly as I could. Sometime later, Dr. Fried arrived to check on how he was doing and called me at once to say he thought John was going to die within hours. I said I would be there as fast as I possibly could. But then Musa called, saying, “Diane, come quickly. I think John has just passed!”

  By the time I got to his bedside, he was gone. All I could do was to weep over his still-warm body. Dr. Fried came to stand beside me, having left John just minutes earlier, when he was still breathing. His words of comfort, though thoughtful and caring, could not ease the pain, the choking realization that my beloved husband had finally, and with relief, passed from this life on to his next journey.

  There was one last act, which at first I was reluctant to carry out. John’s hand was closed into a loose fist, his gold wedding ring shining out at me. I caressed his hand, and, as I did so, Dr. Fried urged me to take the ring. I thought, I can’t hurt his hand by unfolding it, but as soon as I tried, I realized his hand hadn’t tightened, and I could easily slip the ring off. I now wear it on a gold chain around my neck, together with the diamond John gave me to celebrate our fortieth wedding anniversary.

  Too soon, officials from George Washington University Medical Center arrived to carry him away. John and I had both decided to donate our bodies to medical science years before, when Jennifer was in medical school at Boston University. She had told us of the shortage of cadavers from which students could learn human anatomy, and so, hoping to make a contribution, we officially made the donation, just as John’s mother had done when she died in 1990, at the age of ninety-two. A year later, a small wooden box containing her ashes came back to us, and several months after that, we spread her ashes beneath a huge hickory tree at our farm, the same tree beneath which John’s father’s ashes lie. John will join his mother and father under that beautiful tree, as will I, when my time comes.